29 Jun 2007

It was my birthday on Monday. Gordon booked a night in the Slieve Donard hotel in Newcastle, and arranged for my dad and step-mum to come and babysit. We had such a nice time. We were away for just over 24 hours, but it was a wonderful break. The hotel was beautiful and our room (paid for with Tesco vouchers, yippee!) had views of the sea and the Mourne Mountains from all 5 windows.

Dinner in the hotel wasn't great; not what we'd expected. Breakfast was perfect though. If there was a world contest to see what country made the best traditional breakfast, Ireland would definitely win!

We spent time in the health spa (why's it called a spa?) on both days. There was a 20m pool with huge windows along one side, with views of the mountains sweeping down to the bay. It was all so luxurious.

I didn't bother with any of the 'treatments' though. I'm far too tight for one thing, but for another, it's such nonsense. Me and Gordon were cracking up, when I was reading the leaflet in our room, describing the 'Hot Stone Therapy'.

Hot Stone therapy has been used for thousands of years for harmonising, cleansing and relaxing the body at its deepest level. Volcanic in origin, Basalt lava stones are rich in minerals and can be heated and used for deep body massage and intensive energy work. They may be placed on specific energy points or Chakras to help the body clear blocked energy centres and help relax and dissolve stress, drawing excess hyper-energy away from over-stimulated areas, bringing new energy to depleted zones. Different mineralogy in cold stones may bring a cooling, clearing effect when placed on the eyelids.

Isn't that fantastical? Rich in minerals eh? Minerals must be good. But isn't arsenic a mineral? And what are the benefits, how are they absorbed? And how do you relax at 'the deepest level' and my favourite bit of all, the new physics described, whereby 'hyper-energy is drawn away from from over-stimulated areas, bringing new energy to depleted zones.'

But anyway, we loved the place. After checking out, we drove around the mountain roads, stopping off for a peaceful walk in the Silent Valley. It was a special birthday, and the best thing about it was the company. We arrived home just after 5, with a little gift for the children who had, as always, enjoyed their time with their grandparents. They'd been to the park and had ice-creams and everything! Also, my dad had mowed our seriously overgrown garden, he's such a good Daddy!

22 Jun 2007

Last Friday, I went to my cousin's wedding. Gordon wasn't able to go with me; work commitments. Instead I travelled across to the west with my dad and step-mum. Gordon's mum came to our house to mind the children for a few hours, and then M. (our NAS befriender friend) came over to stay until Gordon got home. Both baby sitters said the children were no trouble at all. Phew!

I had a lovely day. My little cousin was looking utterly beautiful, as all brides must! It rained all day, but she never stopped grinning, and was a like a wee ray of sunshine all day. In between the service and the reception, we went to a cafe for a snack; my belly had been rumbling throughout the service, bloody embarrassing! Then we visited my 95 year old granny, whom I haven't seen for far too long. She was on great form too.

The reception was terrific. We shared a table with one of my aunties and a few cousins and their spouses. One cousin had just had a baby so I enjoyed a few cuddles. Actually, whenever we all get together, it seems that someone has always just had a baby or is about to get married. I suppose it goes with having a large family. As always at these things, I enjoyed the crack, chatting and catching up and reminiscing about good times and also the hard times we've shared. The bride's father, my uncle, had died when she was only 8, in a work place accident, leaving her mother to raise 4 young children alone. Her eldest brother walked her up the aisle, and later gave a short, moving speech, though he was obviously nervous.

And then we danced! Nothing beats the dancing at a wedding!

Sunday was Father's day and Lady had made a cool card. She drew a picture of her dad with a big head and a tiny body topped by a light bulb in a thought cloud. On the back she drew another version of Gordon, with a speech bubble and the words "BAX...BAT...apoptosis...mitochondria" (words he uses often at work) which went down very well!

Since then, it's just been same as usual round here. Lady has been reading about the Greek Myths, and started to write and illustrate a few of her own short stories such as;

The Magic EyeOne day the king Eurystheus saw that he was getting old. He wanted to see his grandchildren but he couldn't see them if he was dead. The king had a daughter called Aneena. She was beautiful, but she didn't want to give birth. She liked the palace and she did not want to get married. This made the king cross. So one day the king put Aneena in a box and sent her away.THE END

I asked her if she thought she'd get married, she said she might but not 'till she's much older. She wanted to travel around the world and go diving and go to the Great Wall of China, like her aunt C!

Thomas and I were talking about letters and their sounds. I asked him if he could think of any words starting with the letter 'P' and he said 'pee, like you do in the toilet' so I agreed, that was one such word. Then he thought on and said, 'pee, like what goes under your bed'. I didn't understand this one, so he pointed to the mattress (we were in my room). I said 'that's called a mattress.' He said, ' I mean the thing that goes under it, and the loads of mattresses go on top, and then the princess has to climb up the ladder to go to bed'. Ah, pea...how was I missing what should have been so obvious!

We also had a very interesting talk about evolution, when he asked me about dinosaurs being the scariest animals and I told him that people were never on the earth at the same time as dinosaurs. He asked me who made the first people. He liked the ape story!

Thomas has worn his dad's stripy tie every day this week. He now ties it himself, wrapping it round many times so it resembles a cravat. Lady was worn a red silk scarf on her hair, topped with a pick woolly hat. She likes the way it makes her look like she has long red hair. No uniforms here!

Duncan is going through a major Thomas the Tank phase again. I investigated the lead paint on engines toy recall, but none of those we have are affected, thank goodness. He and Thomas have spent hours each day setting up the 3 different types of track and telling stories.

Duncan also lost his 2 bottom front teeth, and was pleased to receive money from the tooth fairy, which was exchanged for, well guess what, a 'Shiny Sir Handel' train.

15 Jun 2007

When I introduce my children, I do not introduce them as Autistic children.My children are individuals who happen to be autistic. I am lucky, they do notmisbehave in public..they learned very early that they would be removed fromsituations if they could not behave appropriately in public.Even Caitlin and Kiernan know this.

Just because you have an Autistic child does not give them free reign to disturb others in a public situation. If that was the case, we could allow any person to disrupt any situation.If you want your Autistic children to be taken seriously, you must take your Autistic child seriously.

How can we prepare our Autistic children for their future and being accepted by society if we allow them, as children, to act inappropriately in public?

Just because your child was given the diagnosis of Autism does not mean you have to stop parenting your child....

I agree that you have to keep parenting the child. I don't agree that I cannot allow him to act inappropriately in public. Not if acting appropriately means emulating what would be expected from a typically developing child.

My son often behaves in ways that would be described as 'bad'. I don't doubt that his behaviour disturbs other people too. For example, last week I took the children to the zoo and met with several other home-educating families. Duncan wanted to sit in his Major buggy (large pushchair thing) which is good because it gives him somewhere to go and hide under a coat when he wants some peace.

We passed the playground and most of the children went on the equipment. Duncan sat in his buggy for about 10 minutes watching them, though I asked him a few times if he wanted to play. Suddenly he jumped out and climbed the steps of the popular and crowded climbing frame/slide. He screeched happily as he went. When he came down the slide, he didn't want to get off. He wanted to climb up the slide. I told him that children were coming down, climb up the steps. He refused and started to cry hard. I had to hold him to stop him from climbing up while the others were coming down. I tried to comfort him, telling him we'd see the animals. He just got into a major state. It was unexpected. He screamed and thrashed. He hit at me, though as always he held back from actually hurting me. It would have looked bad though. I sat on the ground beside him for about 15 minutes while he got settled again. The place was packed with school groups and loads of little kids were staring at us. The teachers were staring too, but more discreetly.

See, he kicks off some times. He tantrums or makes noise or flails his arms around. It looks bad. Gordon gets really upset when this happens in public, but I don't. I'm getting better at helping him, he's getting better at calming down. People can stare and tut and whatever all they like. I don't have the same expectation of him as I do of his non-autistic siblings. I would be horrified if either of them had a outburst like he does sometimes.

This is part of his autism. It's part of his developmental disability. If he were unable to walk, I wouldn't expect him to run. If he were blind, I wouldn't expect him to see. He's still learning the skills to regulate his behaviour. He gets overwhelmed. He can't explain what it is that is upsetting him, or what it is he wants. It feels to him that his world is falling apart.

While he was upset last week, I was trying some of the stuff that I've said before to help him. I empathised with his mood, told him that I knew he was angry. I told him I would help him. I tried to playfully ask him to 'take the grump out and throw it away' (it helps sometimes!) but he wanted to be angry. What eventually helped was my telling him that he is angry today, he will be happy tomorrow. He often refers to any time in the future as 'tomorrow'. That seemed to make him realise that this feeling would go away.

I seriously considered dragging all the children back to the car and home. Is that what is meant by removing them from the situation?But that would have been unnecessary and Duncan wouldn't have learned anything from it. I have cut events short before, but it wasn't warranted then.

Afterwards, the day was lovely and we all had a fantastic time.

I find it hard to parent Duncan at times, harder than with his siblings. It's not impossible though. It just doesn't come so easily to me. I'm definitely on a learning journey. We both are.

13 Jun 2007

What kind of things shall I write about? I'm not such an interesting a person! Ah well, if you read this, and it bores you, too bad.

When I was 7 and making my first communion, I wanted to be a nun like my teacher.

When I was 33 or so, I came to accept that I just don't believe in god any more. (I blame Bertrand Russell.)

I clean our toilet about 4 times a day. It comes from having little boys with imperfect aim.

I like things to be clean, but am not too worried by mess, well as long as it's not out of control.

As a child, I lived in the countryside, surrounded by fields and cows. I used to like singing to the cows. They'd always walk to the gate to look at me, weird thing that I must have appeared.

When I was 7, my nun teacher used to frequently tell me off for walking around with my hands in my pockets. She said I'd get badly hurt if I fell over.

I'm doing the best job in the world right now. My co-workers are wonderful people. The pay sucks though.

I have a very big family. I have 5 siblings and both my parents came from large families. Unusually for Irish families, non of their siblings left the country, so I grew up with bucket loads of aunts, uncles and cousins.

Yesterday, we visited some home-educating friends for the first time at their house. Their home is big and beautiful, and they don't have a garden; they have grounds! Lady paired up with E, and they spent the day exploring, walking in the rain, riding bikes, practising high jumps, learning magic tricks, inventing spells, catching a frog (they released the creature again right away) and talking, talking, talking!

Thomas spent his time with J, and they walked round with their heads bent, and their brows furrowed and discussed stuff. Thomas had taken his Harry Potter robe/Doctor Who coat and his sonic screwdriver (well, what kind of Time Lord travels without one).

Duncan found a selection of Thomas the Tank Ladybird books. They were tightly packed in a large book case with only the spines on view so it was obvious they were there, right! He also managed to find a few chocolate sweets in a high corner cupboard in the kitchen, that S didn't even remember they had. But you know how some shark species can taste one molecule of blood in a million molecules of water, it appears that Duncan has instead, some enhanced sugar detection system.He liked their rocking horse, and J's toy monkeys and Warhammer figures. He spent most of his time siting in the middle of J's toy castle, looking at Thomas books and eating crisps.

We had a really nice time. Unfortunately Duncan did manage to break a model of a barge E had made and a guitar string and...well something else no doubt :-(The only way to ensure he doesn't cause any damage, however inadvertently, is for me to stay right with him all the time. And I was having a nice chat myself and many cups of tea.

When we went home, E asked Lady to stay for another while, and S agreed to drop her off home later. I think it's the beginning of a beautiful friendship!

10 Jun 2007

It's Duncan's 7th birthday, though he insists he is still 6. He's had a nice day. His Granda came around yesterday with a present; a Brio train set, with a level crossing! He set it up immediately and played with cars crossing the tracks.

Late in the afternoon, the whole family took him to his favourite toy shop so he could choose his gift. He picked a fancy station for his 'noisy trains'. He and Thomas played with it for hours when they got home.

When I'd asked him last week what he wanted for his birthday present, he said,'Percy runs away, Ladybird book. Henry stuck in the tunnel, Ladybird book.' So I ordered them from Amazon and hid them in my room. I gave them to him this morning, still in the brown padded envelope, which I know is much more exciting to him than wrapping paper. He was delighted with his books and I had to read the oh so familiar story of Percy the cheeky engine, right away.

It was warm and sunny today, and the paddling pool was out. The children from next door came round, and Gordon's mum joined us in the afternoon. I'd made a chocolate cake, and decorated it with an icing train track, then stuck his toy Percy on top, and jutting into a pile of the chocolate icing. This was to recreate the scene in 'Percy Runs Away' when Percy runs into a bank of earth. Duncan thought this was marvellous. We all sang happy birthday, he sang loudest of all, but covered his ears all the same!

Gordon wanted to take his photo, and Duncan negotiated with him, agreeing to pose only if he could also hold his new Ladybird book. So the first few photos were of the book covering his face, then he lowered it for, what I'm sure you'll agree, is a very lovely birthday photo!

... it was by accident that I discovered the Camphill Community at Glencraig and found out that nearly 200 people live there on about 100 acres. They have a school and a farm, grow vegetables organically and are more than 60% self sufficient.
Glencraig had been set up in 1954 as a place where children with special needs could be educated and looked after. Today, it is a community that has grown to include all ages.

I live fairly close to Glencraig, and I knew it contained a school where most of the children were autistic. So 2 years ago, I went to look around the place on its open day. I had not realised that the children live at the school. Obviously, that alone meant there was no way Duncan would be going there.
But the ethos of the place did not appeal either. It was all very nice, the staff seemed kind, the farm was well tended and impressive, the building's colours were muted and calm and there were wax pictures and candles and handwoven rugs in abundance.
There were teachers who also had roles as house parents, as the children and adult residents lived on-site in homes of about 15 people, together with the co-workers; mostly students on a gap-year after leaving school.
But where were the computers, the augmentative communication devices? How free were the residents to come and go as they pleased? Were they really helping each person develop to the best they could be? How did the children cope without their parents?
The article continues;

I later discovered that Glencraig is a place where some very precious words are never preached, but practised every day: 'Love thy neighbour as thyself'.
And it was only later that I got the opportunity to make a film about Glencraig, a film that might also prompt us to look at the way we live our lives.

There is no doubt it is a nice place and the people choosing to work there want to help others and create a peaceful environment. Several of the staff spoke of how they were a community, how they learned as much from the residents as they taught them. I may be overly cynical, but was it more than platitudes? I wonder if there is still bullying, if some residents are miserable. Is any place free from such problems? Do the staff have any concept of the advocacy movements by people with Down Syndrome and autism? Are they interested? They said that everyone has a say, but can the residents make decisions about anything more important than what to have for dinner?
One of the staff describes how they assign tasks so everyone has a role to play;

"If someone is autistic and can only push a wheelbarrow that's OK," said Paul. "We need someone to push a wheelbarrow. Someone else can pick the peas. Someone else can pack and process them."

While watching the film, they showed a young blind woman. A co-worker told talked about this woman's role in the laundry, where she does no work, but brings cheer and light to the room. The same woman was shown playing music (a lute, I think) beautifully, with deep concentration and skill. I wondered, (accepting that I don't know anything about her beyond the short amount shown), how in a place that values the work of each person, they couldn't find a more active role for this woman.
The article finishes;

Another truth was that in a world that has mostly lost its relationship with the earth there was a huge respect for it and for the rhythms of the day and of the year. The seasons were very important at Glencraig and the life of the community revolved round them and were cherished and celebrated.
And then there was the truth of the light. The candle. A simple symbol that the
founder of Camphill, Dr Karl Konig, loved. It was hard not to notice the candles
at Glencraig, especially at festival times, gentle and tender and bright and everywhere.
"We do not label people," said John. "Labelling people diminishes us. Everyone is equal here. Everyone is special. There is a light inside every human being."

I wondered if all the residents enjoy all the ceremonies, the candles and singing and joining of hands on the lawn. Were all the autistic residents really happy with that? I also disagree with the idea that a label diminishes anyone. Autism, is not an add-on, but an integral part of a person. Duncan's autism is a part of him and how he perceives and interacts with the world. To ignore his autism would not help him.
I'm not at all sure that I'm being fair here. I hope that everyone at Glencraig is truly happy, fulfilled and cherished. It is a lot better than many of the alternatives, and without it, the residents might well be much worse off. But it did come across to me as a nice, Steiner-y prison.

4 Jun 2007

It's been a while since I last posted. I've been busy, and did much reading and thinking over the weekend.

However, life has gone on and there are several things I want to make note of before I forget them. Like, our trip to the playground last Thursday, when we met up with a gang of other home-educating families, with some old friends and some new ones. It was wet and often cold, but the children still had fun. Lady has at last mastered the art of swinging, and she played most of the time with another 8 year old girl whom she really likes. Thomas paired up with his best buddy, and I rarely spoke to him for the few hours we were there. He was much too busy playing! Duncan enjoyed it too, although he did keep running to the exit at first, saying he wanted to go to McDonald's (we'd passed one on the way there). Eventually he got into the swing of it too, climbing and sliding and having a grand old time. He was on great form, and although I stayed close and kept a careful watch on him, I rarely had to intervene. He did catch me out somewhat when he slid down the slide, ran to the grass verge, and stood to pee. But it was a heck of a lot more socially acceptable than doing it while up the climbing frame! Also, once he approached a man who was holding his daughter's toy Woody (from Toy Story) and was reaching out to touch the toy. I told him it was the little girl's toy, and he left it at that. I explained to the man that Duncan is autistic; he smiled and was perfectly nice. Our friends came to the house after and the children continued to play while we had tea and a chat and warmed up again!

In the evening I was reading to Thomas, a story about a dog taking another dog's bone. I asked him what it's called when someone takes what isn't theirs, he said 'it's called, rude!' Fair enough!

Duncan has continued to draw loads. I took photos of all his most recent art works. I like to see the progression in his ability. I've put them on Flickr here (they're public).

Lady has been marvellous lately. I am so proud of that girl. It's so nice to have an 8 year old daughter about the house, especially when she can make a fine cup of tea! Earlier she showed me a marvellous Superman story she's written. As she was leaving, I asked her for a hug and told her how much I love her and that she is a bright light in my life. She said, 'Thanks! But so is Duncan and so is Thomas!' She always wants to have them included too. So much for the 'poor damaged sibling of the disabled child' theory.

On Friday night, Gordon's Mum babysat again. She is such a star! We went to a dinner dance, (or ball, if you're feeling posh.) I got the tickets from a woman who goes to salsa class with me, and proceeds from the evening were going to the charity that pays for Gordon's research. We had such a good night out. The food was terrible and the wine was rough, but that was not why we were there. (And also, we are both far too fussy these days! I've been spoiled by Gordon's good cooking.) But there was a live, 2-man band, playing fun, wedding-type music, and we chatted and danced, and I even did a little bit of salsa. Though, I now realise that strappy sandals are not best suited for this.

Duncan was enjoying the Pixar site today, especially the short film Knick Knack. He's been singing the Bobby McFerrin music from that film for the past few days, and we've all joined in.He sings, 'do-be-de do-be do-be do-be-de,' and we go 'wa-wa, wa-wa wa wa-wa-wa-wa.' I'm sure you get it!

About this Blog

Curious, enthusiastic and affectionate mother of 3, one of whom is perfectly autistic, I find great joy in each of my children and strive to help them learn and grow in an atmosphere of love and acceptance of their differences, difficulties and strengths.

The children's pseudonyms reflect my autistic son's one time love of all things Thomas the Tank Engine.

This is my personal blog so all posts and opinions shared are my own and not those of my employer.